Dutch Chronic Pancreatitis Registry (CARE): Design and rationale of a nationwide prospective evaluation and follow-up

U. Ahmed Ali*, Y. Issa, H. van Goor, C. H. van Eijck, V. B. Nieuwenhuijs, Y. Keulemans, P. Fockens, O. R. Busch, J. P. Drenth, C. H. Dejong, H. M. van Dullemen, J. E. van Hooft, P. D. Siersema, B. W. M. Spanier, J. W. Poley, A. C. Poen, R. Timmer, T. Seerden, A. C. Tan, W. J. ThijsB. J. M. Witteman, T. E. H. Romkens, A. J. Roeterdink, H. G. Gooszen, H. C. Van Santvoort, M. J. Bruno, M. A. Boermeester, Dutch Pancreatitis Study Grp

*Bijbehorende auteur voor dit werk

OnderzoeksoutputAcademicpeer review

19 Citaten (Scopus)

Samenvatting

Background: Chronic pancreatitis is a complex disease with many unanswered questions regarding the natural history and therapy. Prospective longitudinal studies with long-term follow-up are warranted.

Methods: The Dutch Chronic Pancreatitis Registry (CARE) is a nationwide registry aimed at prospective evaluation and follow-up of patients with chronic pancreatitis. All patients with (suspected) chronic or recurrent pancreatitis are eligible for CARE. Patients are followed-up by yearly questionnaires and review of medical records. Study outcomes are pain, disease complications, quality of life, and pancreatic function. The target sample size was set at 500 for the first year and 1000 patients within 3 years.

Results: A total of 1218 patients were included from February 2010 until June 2013 by 76 participating surgeons and gastroenterologist from 33 hospitals. Participation rate was 90% of eligible patients. Eight academic centers included 761 (62%) patients, while 25 community hospitals included 457 (38%). Patient centered outcomes were assessed by yearly questionnaires, which had a response rate of 85 and 82% for year 1 and 2, respectively. The median age of patients was 58 years, 814 (67%) were male, and 38% had symptoms for less than 5 years.

Discussion: The CARE registry has successfully recruited over 1200 patients with chronic and recurrent pancreatitis in about 3 years. The defined inclusion criteria ensure patients are included at an early disease stage. Participation and compliance rates are high. CARE offers a unique opportunity with sufficient power to investigate many clinical questions regarding natural course, complications, and efficacy and timing of treatment strategies. Copyright (C) 2014, IAP and EPC. Published by Elsevier India, a division of Reed Elsevier India Pvt. Ltd. All rights reserved.

Originele taal-2English
Pagina's (van-tot)46-52
Aantal pagina's7
TijdschriftPancreatology
Volume15
Nummer van het tijdschrift1
DOI's
StatusPublished - 2015

Citeer dit